A Qualitative Approach

Qualitative research methodologies offer greater understanding of students "on the fringe" and a Disability Studies frame provides an alternative, more empowering option of study and interpretation than the dominant clinical experimental approaches. Qualitative methodology, Bogdan and Biklen (2003) suggest, is appropriate for an inquiry into questions asking how things work or what people think. They explain, "if you want to understand the way people think about their world and how those definitions are formed you need to get close to them, to hear them talk and to observe them in their day-to-day lives" (p.31). In general, research techniques such as prolonged engagement and astute observation in natural settings gathered in detailed field-notes allow for a depth and scope of understanding unavailable within experimental designs (Glesne, 1999; Lincoln & Guba, 1985). This becomes important when trying to examine the lived experiences of people with disabilities who might not communicate in conventional terms and whose impairments manifest themselves in highly variable ways. People with disabilities and those of us who interact with them in our daily lives 3 understand the importance of familiarity when negotiating a shared understanding that only comes with prolonged engagement. It is the understanding of the context that oftentimes becomes essential in determining intended meaning. That said, intentionality is a topic of contention even among those of us who consider ourselves to be fluent and articulate communicators without impairment.

As with members of other culturally-marginalized groups, people with disabilities in general, and children with significant disabilities in particular, have historically been denied the opportunity to express their perspectives with few exceptions (Biklen, 2000; Broer, Doyle, and Giangreco, 2005; Erickson & Koppenhaver, 1997; Kliewer & Biklen, 1996, 2001, 2007; Kluth, 2004; Mishler, 1993, Pugach, 2001; Reid & Button, 1995). The voices of young people with significant disabilities have only recently been heard, many through interpretivist qualitative research studies such as Broderick and Kasa-Hendrickson's (2001, 2006) and Rossetti and colleagues' (2008) work with young people with autism. Biklen's (2005) edited book Autism and the myth of the person alone includes works authored by people labeled with autism. Several of the people described in these works refer to their spoken language as unreliable and suggest we focus our attention on their written (or typed) word instead. Peterson (2009) also employed interpretivism in her qualitative study about self-determination in the life of a young African American woman with cerebral palsy and a visual impairment where she incorporated poetry in her efforts to make meaning of the woman's agency. Their written words are the closest we have come to understanding the lived experiences of people on the fringe, but what about those who do not have the access to conventional written communication?

Goode (1994) studied two young girls with limited use of sight and sound resulting from the rubella virus, unintelligible speech, and no communication devices. He used prolonged engagement and systematic observation techniques for data collection to study the girls' experiences and social interactions over a nine month period across multiple settings where the girls lived their daily lives. Though he grappled with "how to use formal language to tell the story of persons themselves without formal language" (1994, p.1), Goode's contextualized descriptions that included the words of family and paid staff provided valuable insight into how societal systems can negatively influence experiences of more complex disability. Similarly, Linneman's (2001) study of four children labeled mentally retarded involved ethnographic description of multiple settings, including spoken and written communication with families, support personnel, and to a degree with the children themselves. Using his field-note data, Linneman illustrates how the concept of mental retardation is socially constructed through service systems including schools. The use of qualitative techniques in these studies offers possibilities for educational researchers to document the lived experiences of young people who are less often described in mainstream research. Although I utilized these same data collection techniques in my year-long study of three young people with significant disabilities, I struggled with how to capture their essence, their talents, and what I came to recognize as their sense of agency. Portraiture methodology offered an approach that mitigated some of these challenges.

A "Blending of Art and Science" in Educational Research Methodology

Qualitative educational researchers acknowledge credibility challenges, but contend "it is always possible for there to be different, equally valid accounts from different perspectives" (Maxwell, 1992, p.283). For decades Elliot Eisner (1999) has made the case for artistic approaches to qualitative research, suggesting a combination of both scientific theory and artistic images in the study of the human condition. Similarly, Lawrence-Lightfoot (2005) explains "The process of creating narrative portraits requires a difficult (sometimes paradoxical) vigilance to empirical description and aesthetic expression" (p.10). Through a "blending of art and science," narrative portraits utilize detailed observational data documented in field-notes (the science) and negotiations of meaning through prolonged interactions to capture the "essence" of a human being (the art). Lawrence-Lightfoot explains:

The portraits are designed to capture the richness, complexity, and dimensionality of human experience in social and cultural context, conveying the perspectives of the people who are negotiating those experiences. The portraits are shaped through dialogue between the portraitist and the subject, each one participating in the drawing of the image (Lawrence-Lightfoot & Davis, 1997, p.3).

Such turn-taking in the negotiation of meaning is similar to the constant-comparative approach in qualitative analysis whereby the researcher begins with data collection, repeatedly reviews the data looking for themes, returns to the site of study to collect more data, followed by further review in a circular manner creating knowledge inductively (Bogdan & Biklen, 2003).

Portraiture's underlying "co-constructive structure" assumes a shared active interpretation of the data, whereby the people who live in the social contexts under study additionally review the data, reflect upon it and offer their own interpretations. In contrast to case studies which tend to objectify the persons of interest, where a person is referred to as a "case," portrait data is not restricted to the researcher alone. Instead, the data is shared with the participants, who are acknowledged for their active role in negotiating meaning and thus the typical power relationship is disrupted. In this sense, portraiture intentionally provides openings for personal transformation. Portraiture offers transformative opportunities for all involved including the portraitist (educational researcher or teacher), the subject of the portrait (in this case the student labeled with a disability along with those who are part of her daily life), and the reader of the final narrative text who interprets the portraitist's rendering.

Portraiture also focuses on "the good" in much the same way as other qualitative researchers seek out positive constructions of people with disabilities from which to study and learn (e.g. Biklen & Burke, 2006; Bogdan & Taylor, 1987; Erickson & Koppenhaver, 1997; Giangreco, Dennis, Cloninger, Edelman, & Schattman, 1993; Kliewer & Biklen, 2007; Wansart, 1995). In the gathering of portrait data described later in this paper, I found other people who played important roles in the lives of my research subjects, or rather participants in my portraits, who subsequently reinterpreted the young people with disabilities in more positive ways. In this manner portraiture challenged the medical model where the "view of our social world magnifies what is wrong and neglects evidence of promise and potential…and resists this tradition-laden effort to document failure" (Lawrence-Lightfoot & Davis, 1997, p.9). Portraiture as a qualitative method serves to "problematize unrecognized assumptions, implications, and consequences of various kinds of educational practice, policy, and research" (AERA, 2009, p.482) with particular regard to marginalized groups of students and those entrusted with their education.

Data Collection and Procedures: "This is about me!"

As a mother of a child diagnosed with trisomy 21 (also known as Down syndrome), I took part in community-based family support groups where I announced my interest in recruiting family participants through a one-page study description. After families contacted me, I visited their homes to explain the study in greater detail and garner their voluntary participation, noting they could withdraw at any time. In this way, the participants were recruited using purposeful and snowball sampling (Bogdan & Biklen, 2003; Maxwell, 1998). Over an eight month period I entered the homes, neighborhoods and school environments of David 4 , 10, who was diagnosed with autism, Kari, 17, who was diagnosed with trisomy 21 and Marie, 8, who was diagnosed with Rett syndrome (considered to be part of the autism spectrum); all three were labeled "retarded" by the special education process. I continued communicating with the families for another three months primarily via email and phone calls, documenting each in a contact log. During our initial meeting, when the conversation became dominated by the adults, Kari sat between her parents on the living room couch and interjected, "This [study] is about me!" Her assertion proved to foretell her sense of agency that was to become apparent during the year-long study. I collected descriptive data as a participant observer (Bogdan & Biklen, 2003) recording my weekly visits using field notes, audio and video. Informal interviews were transcribed verbatim and observational field notes were typed with reflective memoranda resulting in nearly a thousand pages of data. Documents included drawings and writings constructed by the participants, copies of their educational records, and videotaped footage and photographs.

For analysis, I used the constant-comparative procedures of simultaneously synthesizing the data collected while also collecting more data as I refined my understanding in an effort to make sense of what I learned (Bogdan & Biklen, 2003; Glesne, 1999). The data was coded and sub-coded into themes. As part of the analysis process, I often shared my interpretations with the participants and sought their feedback. This led Kari, who had since turned eighteen, to request the use of her "real name" instead of the pseudonym I had been using as she read drafts. Kari's request at this point in the study echoed her initial reminder when I sought her participation: "This is about me!" In both cases her comments illustrated the theme of agency (Giroux, 1992) that emerged. As you will see in the portrait excerpts in the following section, although David, Kari, and Marie struggled to negotiate social borders, they sought involvement with and reciprocity from people in various contexts, exuding their sense of agency. Although arguably less than a full co-construction, these three portraits engaged the primary participants in ways that acknowledged their agency and thus seemed to provide a richer and more complex interpretation of the participants' lives than other methodological approaches would have offered.

David's Agency

Ten-year-old David hardly spoke. When addressed directly, he would usually respond using a conventional cadence and inflection, but the words were imperceptible. He frequently said "Burrr…eeee" or "EEE." While playing with his father one day I heard him repeat "Dad, Dad, Dad." His family told me he could sing along to the Beatles' Yellow Submarine and once during Sunday church services while sitting beside his mother, David suddenly said aloud and with clarity, "I love you, Mom." More often though, David's effort to vocalize specific words seemed painstaking and exhausting as he struggled to connect his thoughts with his body. His mother explained, "The words get stuck." He had an electronic voice output communication device called a Dynavox, but it was rarely used. In the special education classroom in the local elementary school where David spent most of his weekdays, they used a picture schedule 5 on the wall to tell him the day's sequence of activities. The family had just begun using a picture schedule displayed in their kitchen. Yet, in both instances the pictures were limited primarily to functional vocabulary, thus restricting David's opportunities for initiating conversation or developing reciprocal communication. A young woman who supported David in the community and sometimes at home as a "respite care worker" commented, "He understands a lot more than you think…if you just talk to him [and] pay attention to his particular gestures." On the one hand, her comments were optimistic, and presumed competence. On the other hand, the very term used to describe her paid relationship to David, "respite", means families "take a break" from their children with disabilities (see Disability.gov), discloses underlying structures based on assumptions of deficit.

Though David's mother acknowledged he "communicates with behavior," his behaviors were not always interpreted as meaningful. For example, despite his willingness to share his body sock 6 with family and classmates by allowing them to climb inside with him, David's label of autism defined him as unsocial and, according to his special education teacher, "in his own world." Also, David's difficulty with keeping his clothes on and need for frequent movement were often interpreted as "problem behaviors in need of intervention" by the educational personnel. His younger brother explained to me he thought David was probably just hot, but his mother thought it might have been "his way to protest." Her comment suggested an underlying motivation far more intellectual and cunning than what was reflected in his individual educational program. Portraiture readily captured these kinds of exceptions. Other examples included when he drew his self-portrait with me, when he danced with his classmates in music class, and in kindergarten when he sought out a peer who read to him. In one situation David's mother drew a picture of him and titled it "David." He subsequently drew a picture of a person's head with facial features, which his mother initially thought was of her and thus began to title it "Mom," however he immediately jumped up and began hopping, shaking his hands, and making high-pitched sounds, all behaviors those familiar with him knew to indicate he was upset. Then, when his mother crossed out her name and wrote "David" above his drawing, he calmed down and rejoined us drawing on the floor.

Cazden (2001) studied the opportunities students were provided to speak in classroom contexts. She writes, "The most important asymmetry in the rights and obligations of teachers and students is over control of the right to speak" (p.82). Cazden's idea of speaking rights is a useful idea for discussing David's communication. It suggests that David should have had the right to speak, or in his case, use whatever means he might have to communicate, to share his thoughts and feelings with others. The other part of speaking rights, Cazden asserts, is listening responsibilities, where teachers (and others) listen and respond to students' voices. Thus, Cazden suggests teachers (and researchers) pay attention to the ways in which people talk to and listen to students (or participants). Therefore, I looked for occasions in which people had expectations for David to "speak" and noted how they listened to what David was "saying."

Outside his family, few people talked directly to David; those who did sometimes used an altered cadence (somewhat stilted), a higher pitch, and/or shortened sentences. My observations of the teachers in David's "integrated" classrooms indicated they did not address him directly nor ask him to contribute to class discussions. The adults in David's special education classroom described students as "good" if they immediately complied with verbal directives or if they were quietly and independently working; students were described as "bad" if they got up from their desks or made vocalizations. Therefore, David was generally discouraged from talking in his typical school day. Interestingly, a few paid professionals and his family tended to give voice to their interpretations of David's vocalizations and behaviors. For instance, while looking through the family photo album at the kitchen table during a visit, David immediately smiled and made sounds of excitement upon seeing his childhood picture, to which his mother exclaimed "Oh, I'm so excited! Look at me!" In this way, David's mother offered a translation for me of what she thought David was "saying."

In summary, David's portrait illustrates a complicated boy who struggled against limitations and assumptions the educational and related service systems seemed to set up in order to negotiate relationships. Despite being described by his special education teacher as "being in his own world," she offered alternative examples where David and some peers initiated communication with one another. David's family interpreted his behaviors as intentional and meaningful, even offering the idea that he was protesting against situations where he was being misinterpreted. The co-constructive nature of portraiture was best exemplified during the drawings of the self-portrait where David, his mother, and I reinterpreted his actions through a delicate dance of observation, active listening, and the willingness to rethink our initial assumptions. However, I must admit that I did not relinquish my more authoritative role as researcher to the same extent with David as I did with Kari.

Kari's agency

Seventeen-year-old Kari's speech was discernable to those who knew her and she was quick to assert herself verbally. During my initial explanation of the study to her family, she declared, "This [study] is about me." When I entered her home one day she stated, "My house, my rules." Her unconventional behaviors, such as acting out a scene from a play or movie in public, might very well have been part of her sharing her feelings at the moment with me, but they could just as likely have been her efforts to push me back, to affirm her equal status in our relationship, or even, to take the lead in the project. Once, I expressed my discomfort with Kari's public display of loud and socially unconventional behaviors to which she responded "truce" while she took my hand in hers. When I asked her father about Kari's comments and public performances, he referred to it as "teasing" but acknowledged, "It's just hard to tell." Indeed, as with David, I found these young people exemplified research participants Lewis and Kellet (2005) thought of as difficult to understand.

Despite her early inclusive educational experiences, Kari's schooling became increasingly segregated as she grew older. The exception was her participation in theater. Musical theater was open to her in large measure because her father's active role in the schools' performing arts curriculum, not necessarily because it was common practice in the district. During this study Kari's parents began to question the rationale behind her school's focus on non-academic curricular activities for their daughter and they sought Kari's input in revising her individualized education program. "I took [photography] because I wanted to take different classes, to be with different people" Kari said in between sips of her coffee drink during one of our visits to a trendy coffee shop. "I want to be different," she explained, indicating a desire to be different from her classmates in the Life Skills classes where she and other students with similar diagnoses were instructed in window washing and sweeping floors. After asserting herself, Kari and her parents changed Kari's course schedule to include art, speech, choir, and U.S. Government.

Over the year we spent together, Kari wrote extensively, and since the conclusion of the study she continued to correspond with me using email me and handwritten cards, and the following year we co-presented this research at a national conference (Sauer & Fordice, 2008). Sometimes she wrote scripts mixing quotes from plays (she regularly acted in annual theater productions) and song lyrics with real life familiar people including me as characters. She once extemporaneously crafted a song directed at me when I arrived at her home to find her singing aloud while looking at the mirror and holding a broom as a microphone. "I'm a pop diva," she told me and when writing what we referred to as her "biography story," she began with "Singing is what I do." Though met with mixed responses, Kari consistently engaged literacy and the performing arts as tools for negotiating social membership and accessing academics.

I soon joined the few people interested in developing a reciprocal relationship with Kari and became comfortable enough within the relationship not to be bothered by the socially "appropriate" expectations of conversations one might expect of an older teenager. Her family suggested that the development of her reciprocal relationships "rests almost entirely on the other party," that the person needs sophistication and a "sarcastic palate" in order to negotiate shared understanding with her. I found our shared background in theater arts and knowledge of current pop culture to be helpful in interpreting her communication. She often redirected conversations away from those I conjured up and after a few months of regularly spending time together with the voice recorder left conspicuously on a counter, one day she picked up the recorder and began a monologue about herself. Relinquishing control of the conversation, the activity, and/or my research tools (i.e. pen, notebook, voice recorder, computer) was difficult for me but I soon realized how much more I could learn from giving her the recorder and letting her record anything from her daily life she so chose to record. Kari's assertions and her family's comments directly impacted the study. I subsequently bought more recorders and gave one to each participant, the transcriptions of which revealed entirely new collections of data that seemed far less inhibited than those recordings I had collected over several months during my visits.

Marie's agency

Marie was eight years old and she attended her rural neighborhood school alongside her typical peers for most of her school days. As part of her special education program, for less than an hour each day, she would sing her spelling words while swinging in the gym locker room or work individually with special education staff on early literacy and math skills. Although her speech was similar to David's in that her words were not always discernable, Marie often spoke or sang songs offering an almost continuous monologue alongside her near-constant movements. Unlike David, she did not appear to struggle with vocalizations and in many ways she expressed herself in ways more similar to Kari. Marie had a loud voice and she appeared to be aware of the power it provided to call attention to herself and get what she sought after. In school I observed a number of occasions where Marie raised her hand while calling out "Look at me!" During a field trip I observed her warning her classmates of the dangerous stairs: "Guys, careful. Watch step." Her teacher told me, "She'll be a great hall monitor."

During my initial home visit her mother commented, "Marie loves to be part of the action," which was an apt way to describe Marie's involvement in her family, the school, and the neighborhood community. She played alongside her three younger siblings and her classmates. The following vignette illustrates her active role in negotiations. I joined Marie and one of her "typical" classmates at the park and library one day. The girls took turns using verbal and non-verbal communication to negotiate meaning without apparent difficulty. "I [am] here," Marie called out to her friend at the playground. "Look at me…I watch you. You do it" Marie voiced, indicating the friend should be the first to slide down. After a while the friend asked Marie "What do you want to do?" to which Marie responded, "I don't know, Read!" At this point the girls left the playground and entered the library where they read books. Marie walked, talked, and played with an air of confidence that seemed to help her in negotiating reciprocal relationships.

When given the opportunity to draw or write, Marie seemed filled with expressive language and she usually covered the paper with letter-like marks while she talked, sometimes narrating her stories with settings and characters. One teacher associate, however, expressed frustration with Marie's persistence with writing, commenting, "I sometimes have trouble with Marie's writing." Such comments echoed those from David's teachers indicating Marie's communicative efforts were not always valued. This stance conflicts with the stated purpose of education to support students' language and literacy and it contrasts with critical theorists who contend literacy is a right and has the power "to reconstitute their relationship with the wider society" (Giroux, 1987, p.7). Though Marie had few intelligible words, her oft-heard refrains "Look at me" and "I do it [my]self" were used emphatically and, like David's behavioral protests, suggested she sought a more powerful and self-directed role in renegotiating her position in society.

Marie's agency emerged long before my study began, early in her schooling when, as her special education teacher recalled she had tried to remove Marie from her general education kindergarten classroom. "There were times we had real battles going down [to the special education room] because she kept wanting to be with the kids [in her class]." During her recollection the teacher acknowledged the irony of the situation and continued in a self-depreciating way, "And it only took me like 3 to 4 weeks to figure out that she needed to be in the [general education] room… she's telling me this. Why didn't I pick up on it?" Marie's teacher admonished herself for not listening deeply to Marie, who had used the non-verbal communication available to her at that time to express her preference to remain in the general classroom. As Marie's friend and family seemed to understand with little effort, and her teacher came to understand upon reflection and my questioning, Marie's agency deserved attention. Her mother aptly explained, "You're not trying to work with a syndrome; you're trying to work with a little girl."